Tuesday, December 1, 2009

Batman not Robin

So what did the main man at the Marsden have to say? Nothing as I didn't see him. £180 on train tickets, Jess taking a precious day off work, lots of emotional build up and Robin turned up instead of Batman. It went something like this.

Lovely lunch in Pantara, Thai restaurant few doors down from Marsden. Get to reception on time and wait to be called; not much waiting time; we all troop into small room with three chairs and a consulting couch. After a short time a doctor comes in; he looks younger than each of my sons but has grey hair, I wonder later if he dyes it just to add gravitas. He speaks quietly so I ask him to speak up and I gather that this is not Ian Judson; he is not in the clinic today; panic what do I do and say? I don't want to be rude to this nice chap, because he is very nice and Judson isn't here so I have to have what is on offer. He introduces himself as Dr Robin Jones one of the consultants on Judson's team and he mentions Washington. I think for a moment that he is saying that he is seeing me because Ian Judson is in Washington or is going to Washington but no he is saying that he, Robin Jones, is leaving to work in Washington next week. So now I am thinking he is saying I am not seeing Judson but I am seeing him and he is buggering off across to America, draining his brain presumably.

I start to feel very disappointed, I have a nice man in Birmingham why am I bothering with another one here in London? but he asks me to tell my story and he is very nice and so all my good upbringing comes into play, damn it, and I don't kick up a fuss; I story tell away. I conclude by saying with a smile that I had hoped to see Ian Judson himself and we all look away and feel a bit bowed down and embarrassed in our British way.

He is apologetic, mostly for the great big NHS cock-up that got me here in the first place. He knows his stuff and he talks about the pathology, about my particular sort of vascular leiomyosarcoma; about the lesions in my lungs and hey ho guess what they are all the worst sort and yes they will discuss me at their absolute top level lung meeting on Friday, when presumably Judson will be there and they may just be able to consider rodding my lungs with radio waves but they have only ever done 6 lungs (or maybe 12!)with this technique. I ask about Rolle in Germany and he sort of laughs and changes the subject even though we push him. He does concede as we become less compliant that he understands that we have to consider every option and that they are not offering much that sounds hopeful. He is lovely, I know he cares, he strokes my shoulder as we leave but in a short half an hour my morale has dropped and I start to feel sorry for myself. It's not what he said although it's hard to hear it - it was what I knew he or even Judson would say - but it is an irrational feeling of being abandoned, of feeling I deserved to see Batman instead of Robin and that the NHS has let me down yet again.

We struggle back on the rush hour tube, and I think perhaps I would rather be dead than doing this and again and again we mull over the options. We will call Rolle in Germany on Wednesday when he is in; if he says yes we will go and take the only positive thing on offer.

And don't worry folks I will bounce back; I have emailed Ian Judson to tell him I am not happy and I am going to do a bit of rebel rousing with my old friends in the NHS; setting a few feathers flying will cheer me up no end.

1 comment:

Arrgh, how frustrating. I feel like rattling some tins and banging some pans on your behalf. Unfortunately it wouldn't be metaphorical on my part as I have zero power and influence, but if you need me to picket something, anything, then I'm there.

I hope Ian Judson is EXTREMELY apologetic and offers some kind of practical reparation for his clinic's error.

About Me

I am 62, retired from running my own events business. I have been married to Stewart for 43 years and have four fantastic children, Sam, Joe, Luke and Jess, four grandchildren, Harry and Danny and new twins, Max and Charlie; I also have two step-grandchildren, Hannah and Chelsea.
On 11 September 2009 I was told that the very rare leiomyosarcoma that was found in one of my veins in summer 2008, and removed, had metastasised and I now have sarcomas in my lungs. By April 2010 it had got to my liver and back to my leg. In January sarcoma nodules were found on the horse's tail, the bunch of nerves that come out of the base of my spine. Despite radiotherapy, the paralysis spread very quickly and I have no feeling at all from my hips down.
I will try to log what all this feels like in this blog and keep in touch with friends, family and fellow travellers along the way.